Addie Rose's Mobility Devices
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Addie Rose used to be a happy healthy 4 year old who loved to run around a play just like any kiddo her age. She has always been a bit different with the way she moves. She has been through therapies and had braces since she was about 1 1/2 years old but it never stopped her. As she says "that's just how I run" she made things work her way so she could still play like other kids.
About 3 months ago that started to change. She started complaining of pain in her knee so we took her to her orthopedic doctor who not only x-rayed the wrong knee but did not ask her about the pain or ask me and he didn't move her around or feel the joint. All he did was have her walk a few feet away from him and back to him then said "I think she looks fine". I was not satisfied with that answer so I started looking for a new doctor even though we have seen this one since the beginning of her ortho journey. After this appointment things started to get worse. She developed a limp, then complained of pain in the other leg...then her back and finally her neck. It got so bad that she started to walk dragging her feet, using her hands on her thighs to support her weight, she could no longer use the stairs most days and eventually got to the point where a lot of days she couldn't even get herself out of bed or on and off the potty. This was all from her pain. We have more bad days with little to no mobility than we have good days where she can walk for short periods of time. She can no longer bend over at all, she has trouble standing up from sitting and has lost some of her independence.
We finally got into a nee orthopedic doctor who thought she had signs of MS so he referred us to neurology. The day after that we saw her pediatrician who was extremely concerned so she called neurology to prioritize this appointment. Then called us after we left and said that they wanted her admitted to Children's Hospital for neurology on that same day. So off we went. They preformed an MRI of her spine and pelvis which came back with some serious findings. Lesions all over her spine and on her hip. Their two main thoughts were cancer or an infection in the bone. After 10 days at the hospital, 12 sticks between blood work and IV's, another MRI, x-rays of her arms, legs, neck and skull, and lots of other testing they finally ruled out cancer and eventually came to the diagnosis of CRMO.
CRMO stands for Chronic Recurrent Multifocal Osteomyelitis. It is a rare bone disease that has symptoms similar to severe arthritis and MS. It causes severe pain in her bones and joints, can cause fevers, bone infections, bone deformities and a few other symptoms. It has only been around sine the 1970's and is literally only found in one in a million kids. That being said they don't know much about it other than it doesn't have a cure and pain can be managed with prescription anti-inflammatory drugs and steroids (to shrink lesions). She is on naproxen and prednisone and will be on the pain meds likely forever. It will take at least a year for her mobility to start improving so until then she has to have a wheelchair for her bad days and for long trips out like the store, the park, the zoo etc. And a walker for her good days. Insurance will not take care of this so we have resorted to here to help pay for her mobility devices so she can finally get back to playing and doing things most 4 year olds can do. She often tells me "Momma my legs wont let me sleep" or "my legs won't let me play" or "I can't do that because it hurts me" (for something as simple as picking something up off the ground) I just want to be able to help my baby regain her mobility and change some of those "I can'ts to I cans"
Any donation helps and if you can't donate all I ask is for you to please share her gofundme with anyone and everyone you can.
Thank you so much
About 3 months ago that started to change. She started complaining of pain in her knee so we took her to her orthopedic doctor who not only x-rayed the wrong knee but did not ask her about the pain or ask me and he didn't move her around or feel the joint. All he did was have her walk a few feet away from him and back to him then said "I think she looks fine". I was not satisfied with that answer so I started looking for a new doctor even though we have seen this one since the beginning of her ortho journey. After this appointment things started to get worse. She developed a limp, then complained of pain in the other leg...then her back and finally her neck. It got so bad that she started to walk dragging her feet, using her hands on her thighs to support her weight, she could no longer use the stairs most days and eventually got to the point where a lot of days she couldn't even get herself out of bed or on and off the potty. This was all from her pain. We have more bad days with little to no mobility than we have good days where she can walk for short periods of time. She can no longer bend over at all, she has trouble standing up from sitting and has lost some of her independence.
We finally got into a nee orthopedic doctor who thought she had signs of MS so he referred us to neurology. The day after that we saw her pediatrician who was extremely concerned so she called neurology to prioritize this appointment. Then called us after we left and said that they wanted her admitted to Children's Hospital for neurology on that same day. So off we went. They preformed an MRI of her spine and pelvis which came back with some serious findings. Lesions all over her spine and on her hip. Their two main thoughts were cancer or an infection in the bone. After 10 days at the hospital, 12 sticks between blood work and IV's, another MRI, x-rays of her arms, legs, neck and skull, and lots of other testing they finally ruled out cancer and eventually came to the diagnosis of CRMO.
CRMO stands for Chronic Recurrent Multifocal Osteomyelitis. It is a rare bone disease that has symptoms similar to severe arthritis and MS. It causes severe pain in her bones and joints, can cause fevers, bone infections, bone deformities and a few other symptoms. It has only been around sine the 1970's and is literally only found in one in a million kids. That being said they don't know much about it other than it doesn't have a cure and pain can be managed with prescription anti-inflammatory drugs and steroids (to shrink lesions). She is on naproxen and prednisone and will be on the pain meds likely forever. It will take at least a year for her mobility to start improving so until then she has to have a wheelchair for her bad days and for long trips out like the store, the park, the zoo etc. And a walker for her good days. Insurance will not take care of this so we have resorted to here to help pay for her mobility devices so she can finally get back to playing and doing things most 4 year olds can do. She often tells me "Momma my legs wont let me sleep" or "my legs won't let me play" or "I can't do that because it hurts me" (for something as simple as picking something up off the ground) I just want to be able to help my baby regain her mobility and change some of those "I can'ts to I cans"
Any donation helps and if you can't donate all I ask is for you to please share her gofundme with anyone and everyone you can.
Thank you so much
Organizer
Allison Steward
Organizer
Lake Saint Louis, MO